National Living Donor Assistance Center (NLDAC) Links

If someone you know in the U.S. needs travel assistance to be a living kidney donor, let them know about NLDAC:

National Living Donor  Assistance Center

Each year, the NLDAC Advisory Group meets to review program information and make recommendations for improvements. This year, the Advisory Group meeting was led by their new chair, Zoe Stewart, MD, PhD, MPH. We would like to thank this dedicated group of volunteers for their time and expertise: Brenda Dyson; Cathy Garvey, RN, BA, CCTC; Adam Gray, LCSW, CCTSW;  Maryl Johnson, MD; Marie Morgievich, BS, BSN, MSN, CCTC; Lisa Morrison, Kay Payne, PhD; Al Roth, PhD; Jennifer Steel, PhD; Jane Tan, MD, PhD, MS; Betsy Walsh, JD, MPH; Errol Williams; Alexander Wiseman, MD; Warren (Kip) Wright, MSW, LCSW; Mesmin Germain, MPH, MBA (Ex Officio); and Frank Holloman (Ex Officio).  NLDAC Advisory Group and Program Team Members  September 30th, 2016 Arlington, VA NLDAC Survey Comments - September 2016 "I am so appreciative that this program exists to help the process run smoothly!! Thank you SO very much!"-Living Donor, Methodist Specialty & Transplant Hospital, San Antonio, TX "Over all this was wonderful experience and I would do it again if was able."-Living Donor, Walter Reed Army Medical Center, Bethesda, MD "Very helpful - would have been very difficult financially without the help."-Living Donor, Rochester Methodist Hospital - Mayo Clinic, Rochester, MN "You guys were amazing. I could not have donated without your help!" -Living Donor, University of Utah Medical Center, Salt Lake City, UT "You all do a great job. I cannot see anything to improve the NLDAC. Thank you so much for helping me and my family. Thanks!!!" -Living Donor, University of Maryland Medical System, Baltimore, MD "This is a wonderful program that made a huge difference in my life. It made it possible not to worry about the fact that I was not supporting the rest of my family because I was spending so much on the process. HUGE BLESSING!"-Living Donor, Abbott Northwestern Hospital, Minneapolis, MN Contact Us! If you have questions or comments about our program or need assistance completing an application, please contact the NLDAC team at Toll Free: 1-888-870-5002, Phone: 703-414-1600, Fax: 703-414-7874 or E-mail: nldac@livingdonorassistance.org. We are located in Arlington, VA and are available M-F 9:00am-5:00pm ET. NLDAC provides services via a HRSA grant awarded to the University of Arizona and the partners listed below.  Health Resources and Services Administration | American Society of Transplant Surgeons | University of Arizona Health Sciences | Arbor Research Collaborative for Health | Washington University - Missouri | Mayo Clinic - Arizona Funding for this project is supported by grant number U13HS07689 from the Healthcare System Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services.  The contents of this electronic newsletter are solely the responsibility of the authors and do not necessarily represent the official views of the funder.   Educational Videos #1 Who is Eligible for NLDAC? #2 How to Apply for NLDAC #3 After NLDAC Application is Approved NLDAC Brochure and Poster Order Form Transplant Center Application Activity Report Order Form Worksheets English NLDAC Eligibility Screening Tool Donor Application Worksheet Recipient Application Worksheet Financial Hardship Waiver Worksheet Worksheets Spanish Donor Application Worksheet Recipient Application Worksheet Financial Hardship Waiver Worksheet

Non-directed organ donors and NLDAC financial support

For some years I've been a member of the advisory group of the National Living Donor Assistance Center (NLDAC) which is authorized to offer federally funded financial support (for travel, and now also for lost wages and childcare expenses) to needy donors whose recipients also cannot afford to offer such support. As kidney exchange has grown, so have the number of non-directed donors, who don't have a particular recipient in mind. In a recent email, NLDAC has defined how these donors can qualify for financial assistance.

"Defining Non-Directed Donors

"Eligibility for NLDAC depends primarily on the recipient's household income. This is because the Organ Donation and Recovery Improvement Act requires NLDAC to assess the recipient's ability to reimburse their donor before providing reimbursement with federal funding. Most donors have a particular recipient in mind, and that person is allowed to reimburse their expenses, if they are willing and able to do so. NLDAC provides reimbursement when the recipient cannot afford to provide it. Some donors do not have a recipient to ask for help, though. A non-directed donor is a living donor with no intended recipient. These donors can apply to NLDAC without recipient information because there is no identified recipient. Non-directed donors are eligible for NLDAC regardless of their eventual recipient's information, as long as the donor meets the residency requirements and applies on time. 

"Let's consider some examples:

"Tina heard on the news that there are 5,000 people waiting for a kidney transplant in her state. She called a transplant center and asked that they give her kidney to anyone who needs it, if she is approved to donate. Tina is a non-directed donor because she has no intended recipient. 

"Anthony read about a stranger's search for a living kidney donor on Facebook. Though he doesn't know the person, he would like to be evaluated as a potential donor for them. He is a directed donor because he has an intended recipient, even though he doesn't know them personally. 

"Jacqueline wants to donate to a member of her church without revealing her identity to the recipient. She is a directed donor because she has an intended recipient, though she wants to remain anonymous. 

"Esther wanted to donate to her husband, but they are not a good match. Through kidney paired donation, she donates to a stranger, and the stranger's loved one donates to her husband. Because Esther has an intended recipient who received a transplant through her donation, she is a directed donor. 

"Devin was being evaluated as a potential living donor to his uncle when his uncle received a deceased donor transplant. Devin decided he was still willing to donate even though his uncle no longer needed his organ, and asked the transplant center to give his kidney to anyone on the waitlist. Devin is now a non-directed donor because he does not have an intended recipient anymore. 

"Which of these donors can apply to NLDAC without their recipient's information? Tina and Devin, because they are donating without an intended recipient. Anthony, Jacqueline, and Esther can apply with their intended recipient, and NLDAC will keep the donor and recipient's information private. Esther would apply with her originally intended but incompatible recipient, her husband."

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All my posts on NLDAC:  https://marketdesigner.blogspot.com/search?q=nldac&max-results=20&by-date=true

Compensate living donors for lost wages and other expenses?

It seems like an idea whose time should come, and for which there's growing support:

One simple change the government could make to encourage kidney donation
Donors often forgo wages for a couple weeks to save a life. That can be fixed.
By Dylan Matthews

"there’s a group that helps people with the travel costs associated with donating. It’s called the National Living Donor Assistance Center (NLDAC), and it’s funded by the federal Department of Health and Human Services (HHS), which administers Medicare. But the group helps a relatively small number of donors.
...
"NLDAC can pay for “travel, lodging, meals, and incidental expenses,” but barring regulation from the HHS, it can’t reimburse lost wages or pay for child care for donors. The group is currently running a randomized controlled trial, funded by the Laura and John Arnold Foundation, in a handful of transplant centers where it does reimburse for lost wages to see if offering that increases living donations.

"But NLDAC could adopt that policy nationally, right now, with a simple regulatory change. No action from Congress would be required, according to NLDAC’s own analysis. The HHS can, on its own, issue a rule permitting NLDAC to reimburse lost wages and child care expenses. And randomized trial aside, we already have strong reason to think that reimbursing lost wages would significantly increase donations.
...

"Waitlist Zero has been pushing this change, and Rep. Matt Cartwright (D-PA), a leader in Congress on kidney issues, is on board. Curiously, the National Kidney Foundation, perhaps the most high-profile nonprofit working on kidney issues, has declined to back this modest change. Troy Zimmerman, the group’s vice president of government relations, told me on the record that the group “supports the concept of paid leave for living donors but has not taken a position on this specific proposal.”

Their reluctance to vocally support this move is puzzling and frustrating. Letting NLDAC cover lost wages is a very modest change that would clearly help people, and move us closer to a world where there are finally enough donors to end the waitlist of people whose lives depend on a kidney transplant."

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Here are some earlier posts about NLDAC (I've been on their advisory board since 2016):

Saturday, July 21, 2018  Effects of removing some financial dis-incentives to kidney donation through the National Living Donor Assistance Center (NLDAC)

Tuesday, October 3, 2017  The effect of paying the travel expenses of living kidney donors: Schnier et al. on NLDAC

Thursday, December 22, 2016 NLDAC announces a trial of Lost Wages Reimbursement for Living Organ Donors (funded by the Arnold Foundation)

Tuesday, September 27, 2016 National Living Organ Donor Assistance Center (NLDAC)

Why it's hard to reimburse non-directed kidney donors for their travel costs

A letter to the editor of the American Journal of Transplantation:

To the Editor:

We are responding to the Melcher et al. [1] article, which recommends that the National Living Donor Assistance Center (NLDAC) pay for travel and lodging for nondirected donors (NDDs). We commend the work done by this group of stakeholders and believe the publishing of their findings is vital to improving the process of kidney paired donation. We do, however, need to clarify one point in their many important recommendations.

The article recommends “The National Living Donor Assistance Center should provide travel and lodging expenses to the NDD.” It is important to note that there are limits to the NLDAC program that were put in place by the U.S. Congress. NLDAC cannot pay for the travel and lodging expenses for all NDDs. The Organ Donation Recovery and Improvement Act (ODRIA) [2] established the legislative parameters for NLDAC. ODRIA states that individuals may not receive compensation from the grant if these expenses can reasonably be paid by a State or Federal program, an insurance company or the recipient of the organ. ODRIA requires means testing of the recipient's household income.

In practice, this means a recipient must be identified before an application can be filed with NLDAC. Because NDDs do not have a recipient identified before their evaluation trip to transplant center, NLDAC cannot reimburse those expenses. However, after a recipient is identified, a NLDAC application may then be filed. It should be noted that NLDAC received 42 applications between 2008 and 2012 for NDD, of which 32 were approved, providing NDDs with reimbursement of travel expenses through NLDAC.

If the recipient's household income is below the income threshold of 300% of the HHS Poverty Guidelines, NLDAC is allowed to reimburse those donor's expenses for the surgery and medical follow-up trips. If the recipient's income is above the income threshold, NLDAC may reimburse the donor's expenses if financial hardship is proven by the recipient. If the application is not approved, the National Organ Transplant Act (NOTA) [3] allows the recipient to reimburse the donor's expenses.

Lastly, we agree with the article's recommendation that payers should cover donor travel and lodging costs given that, by donating and traveling, the donor is enabling not only the recipient's transplant, but also those of other recipients.

This letter represents the views of the authors and does not necessarily represent the views of the grant funder.

A. O. Ojo1*, R. M. Merion2, D. H. Howard3 and P. H. Warren4
1Division of Nephrology, Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan
2Division of Transplantation, Department of Surgery, University of Michigan, Ann Arbor, Michigan
3Department of Health Policy and Management, Emory University, Atlanta, Georgia
4National Living Donor Assistance Center, American Society of Transplant Surgeons, Arlington, Virginia
*Corresponding author: Akinlolu Ojo, aojo@med.umich.edu
 The letter is found under the heading
Response to “Dynamic Challenges Inhibiting Optimal Adoption of Kidney Paired Donation: Findings of a Consensus Conference” by Melcher et al.
American Journal of Transplantation, Volume 13, Issue 8, page 2228, August 2013

Effects of removing some financial dis-incentives to kidney donation through the National Living Donor Assistance Center (NLDAC)

Here's a recent paper looking at NLDAC. (I'm on their advisory board.)
It might help make the case for yesterday's proposed legislation...

Clinical Transplantation

 Volume 32, Issue 7

ORIGINAL ARTICLE

Full Access

Return on investment for financial assistance for living kidney donors in the United States

Amit K. Mathur 

Jiawei Xing 

David M. Dickinson 

Patricia H. Warren 

Kimberly A. Gifford 

Barry A. Hong 

Akinlolu Ojo 

Robert M. Merion

First published: 08 May 2018

https://doi.org/10.1111/ctr.13277

Abstract

Background

The National Living Donor Assistance Center (NLDAC) enables living donor kidney transplants through financial assistance of living donors, but its return on investment (ROI) through savings on dialysis costs remains unknown.

Methods

We retrospectively reviewed 2012‐2015 data from NLDAC, the United States Renal Data System, and the Scientific Registry of Transplant Recipients to construct 1‐, 3‐, and 5‐year ROI models based on NLDAC applications and national dialysis and transplant cost data. ROI was defined as state‐specific federal dialysis cost minus (NLDAC program costs plus state‐specific transplant cost), adjusted for median waiting time (WT).

Results

A total of 2425 NLDAC applications were approved, and NLDAC costs were USD $6.76 million. Median donor age was 41 years, 66.1% were female, and median income was $33 759; 43.6% were evaluated at centers with WT >72 months. Median dialysis cost/patient‐year was $81 485 (IQR $74 489‐$89 802). Median kidney transplant cost/patient‐year was $30 101 (IQR $26 832‐$33 916). Overall, ROI varied from 5.1‐fold (1‐year) to 28.2‐fold (5‐year), resulting in $256 million in savings. Higher ROI was significantly associated with high WT, larger dialysis and transplant costs differences, and more NLDAC applicants completing the donation process.

Conclusions

Financial support for donor out‐of‐pocket expenses produces dramatic federal savings through incremental living donor kidney transplants.

Race to the bottom: NLDAC and NY State both aim to be payers of last resort for reimbursing kidney donors

A tale of bureaucracy, in two acts 

1.  NLDAC, the federally funded National Living Donor Assistance Center, was for a long time the only organization that would reimburse  some expenses of living organ donors who qualified by not having high incomes, or any other sources for reimbursements.  That is NLDAC is a funder of last resort:

" Individuals considering becoming a living organ donor can apply for help with their travel expenses, lost wages, and dependent care expenses from NLDAC if they cannot be reimbursed for these costs by their recipient, a state program, or an insurance company.

2. In (very) late 2022,  New York State's Living Donor Support Act (LDSA, S. 1594) became law, and it is about to go into effect this year. The Act provides "state reimbursement to living organ donors, who are state residents, for medical and associated expenses incurred as a result of the organ donation, when the organ donation is made to another resident of the state" 

It further defines NY State as a payer of last resort:, and explicitly rules out payments to donors eligible for payment by NLDAC.

" THE  PROGRAM  SHALL  NOT  PAY  REIMBURSEMENT FOR EXPENSES PAID OR  REQUIRED TO BE PAID FOR BY ANY THIRD-PARTY  PAYER,  INCLUDING  WAGES  OR  OTHER  EXPENSES THAT WERE COVERED UNDER PAID MEDICAL LEAVE BY THE LIVING  DONOR'S EMPLOYER OR THAT ARE COVERED BY OTHER SOURCES  OF  REIMBURSEMENT  SUCH  AS  THE  FEDERAL  NATIONAL  LIVING  DONOR  ASSISTANCE PROGRAM. THE  PROGRAM SHALL BE THE PAYER OF LAST RESORT WITH RESPECT  TO  ANY  BENEFIT  UNDER THE PROGRAM. " 

 

I'm on NLDAC's mailing list, and  a few days ago received an email containing their policy statement on the NY State law. They say they will no longer make payments to NY residents who are covered by the NY State law.

 

 

 

Incidentally, here's my blog post from when the NY State law was passed:

Sunday, January 1, 2023 New York State's Living Donor Support Act (LDSA, S. 1594) was signed by Governor Hochul on Dec. 29

 "like the authorization for NLDAC,  the NY State law (https://www.nysenate.gov/legislation/bills/2021/S1594) "requires that the Program shall be payer of last resort..." I hope that this doesn't turn into a competition to be the payer of last resort in a way that might cause some NY donors to fall between the cracks, and not be reimbursed either by NLDAC or the State of New York."

 

I suppose the larger lesson is that designers of competing markets can create paradoxical situations. 

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Related:

Sunday, July 16, 2023  National Living Donor Assistance Center (NLDAC): I rotate off the advisory board

 

NLDAC announces a trial of Lost Wages Reimbursement for Living Organ Donors (funded by the Arnold Foundation)

Here's some good news in an email that arrived yesterday from NLDAC, the National Living Donor Assistance Center (about which I have had several recent and not so recent posts).  Up until now, NLDAC has only been able to provide travel assistance to some means-tested kidney donors. The new trial will allow the effect on donation of also reimbursing lost wages.

Lost Wages Reimbursement for Living Organ Donors Trial Announced

FOR IMMEDIATE RELEASE Media Contact: Diane Mossholder 703-414-7870 diane.mossholder@asts.org   Arlington, VA – December 21, 2016: The National Living Donor Assistance Center (NLDAC) announces that it will conduct a randomized controlled trial that will assess the impact of interventions intended to remove financial barriers to living organ donation through wage reimbursement.  NLDAC was established in 2007 to administer a grant funded by the U.S. Health Resources and Services Administration to provide greater access to transplantation for persons who want to donate, but cannot afford the travel and subsistence expenses associated with donation. It currently provides travel and subsistence funds for nearly 1000 people per year who wish to become living organ donors to offset their expenses related to donation. Living donors usually travel at least three times to the transplant center and are required to stay near the hospital for up to two weeks after the transplant surgery for monitoring. They are unable to work during their donation and recovery time, and the loss of wages can be a significant financial barrier. This study will provide data to help answer the question of whether removing that barrier increases living donation in the United States. The Laura and John Arnold Foundation provided funding for the trial, which will be administered by the American Society of Transplant Surgeons in partnership with the Arbor Research Collaborative for Health, with additional researchers from University of Arizona, the Wharton School of the University of Pennsylvania, and Mayo Clinic Arizona.  Five transplant centers with active living donor transplant programs will participate in the trial. “Removing financial disincentives to organ donation has long been a goal of ASTS,” said Timothy L. Pruett, MD, president of the American Society of Transplant Surgeons (ASTS). “I’m pleased that we are able to conduct this trial and gather data on the extent to which the prospect of lost wages discourages donors from coming forward or even being asked to consider donating. With more than 120,000 people waiting for an organ in the United States, we must do everything possible to ensure that those willing to donate are able to do so without financial harm to themselves or their families.” “Our study design – potential transplant recipients will be randomly offered or not offered wage reimbursement for their donors – incorporates a high level of scientific rigor,” noted Robert M. Merion, MD, president and CEO of Arbor Research Collaborative for Health. “When the study is completed, we will know much more about the role played by lost wages as a barrier to living organ donation, and the extent to which removal of that barrier leads to more living donor transplants and improved lives for patients. We are delighted that the Laura and John Arnold Foundation has recognized the societal importance of this question.” The trial will begin in 2017 and is projected to run through 2018. ### About NLDAC The National Living Donor Assistance Center (NLDAC) was established in 2007 to provide greater access to transplantation for persons who want to donate, but cannot otherwise afford the travel and subsistence expenses associated with donation. The program is funded by grant number U13HS07689 from the Healthcare System Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services. It is administered by the American Society of Transplant Surgeons, University of Arizona Health Sciences, Arbor Research Collaborative for Health, Washington University – Missouri, and Mayo Clinic – Arizona. For more information, visit LivingDonorAssistance.org.   About ASTS Established in 1974, the American Society of Transplant Surgeons (ASTS) is the oldest abdominal organ transplant society, serving approximately 1,800 surgeons, physicians, scientists, pharmacists, coordinators, and advanced transplant providers. ASTS is committed to fostering the practice and science of transplantation and guiding those who make policy decisions by advocating for comprehensive and innovative solutions to the needs of our members and their patients. ASTS is a nonprofit organization in Arlington, Virginia. For more information, visit ASTS.org. About Arbor Research Arbor Research Collaborative for Health is committed to improving patient care through research that shapes medical policies and practice. In particular, Arbor Research conducts health outcomes research on chronic disease and end-stage organ failure, with expertise in biostatistical analysis, clinical practice, health economics, public policy, database management and integration, and project coordination. Through research projects that are national and global in scope, Arbor Research’s scientific collaborations provide valuable and timely information to the worldwide health care community. A full description of the project portfolio is available at ArborResearch.org.   About the Laura and John Arnold Foundation LJAF is a private foundation that is working to improve the lives of individuals by strengthening our social, governmental, and economic systems. It has offices in Houston, New York City, and Washington, D.C. www.arnoldfoundation.org.

Steps towards reimbursing kidney donors--update from Frank McCormick

 I've written before about NLDAC, the federally funded National Living Donor Assistance Center, which operates under many regulatory constraints. (I'm on their advisory board.)

Frank McCormick brings us up to date on recent steps to relax some of those constraints.  Below I quote from his recent email:

"Since 2007, the federal government has had a program to reimburse low income organ donors for their travel and lodging expenses.  This program is currently administered by National Living Donor Assistance Center (NLDAC) at the University of Arizona.   The Secretary of Health and Human services (HHS) has the legal authority to administratively expand the mandate of this program.  Toward that end, the Office of Information and Regulatory Affairs (OIRA) in the Office of Management and Budget (OMB) has just scheduled a new rule change:

Title: Removing Financial Disincentives to Living Organ Donation 

Abstract: This proposed rule would amend the Organ Procurement and Transplantation Network (OPTN) final rule to further remove financial barriers to living organ donation by expanding allowable costs that can be reimbursed.  The changes would apply to specified incidental nonmedical expenses incurred toward living organ donation. 


2. The second front is centered on the Advisory Committee on Organ Transplant (ACOT), a non-government committee that advises the Secretary of HHS on organ transplant matters.  At its meeting on May 20, the committee heard a very informative presentation by Robert Merion of NLDAC: 

A key part of the presentation was NLDAC’s Vision for Expansion:
1. Expand eligibility for reimbursement to donors with incomes up to 500% of the federal poverty guidelines (it is currently 300%)
2. Waive income verification for donors needing less than $500
3. Approve applications from non-directed donors (i.e., living donors who do not have a specific intended recipient)
4. Reimburse wages lost due to organ donation
5. Reimburse child care/elder care expenses due to organ donation
6. Require NLDAC information to be given to all recipients and donors

ACOT endorsed the first five recommendations and forwarded them to the Secretary of HHS. "

New York State's Living Donor Support Act (LDSA, S. 1594) was signed by Governor Hochul on Dec. 29

 Frank McCormick forwards this email:

From: Elaine Perlman

Sent: Thursday, December 29, 2022 5:44 PM

Subject: Governor Hochul Has Signed the Living Donor Support Act!

 "Hello!

I am delighted to inform you all that the New York State's Living Donor Support Act (LDSA, S. 1594) was signed by Governor Hochul today.

 New York is becoming the best state for organ donation!

 Thank you for your advocacy in support of this legislation. The LDSA will save more New Yorkers' lives.

 Waitlist Zero's Executive Director Josh Morrison wrote the legislation. State Senator Rivera from The Bronx and Assembly Member Gottfried from Manhattan sponsored the bill.

 This spring, a team from the NKDO, NKF, DOVE, LiveOn New York, and Waitlist Zero lobbied for the bill's passage in Albany. Soon after, the LDSA was unanimously passed by both houses.

 This new law creates the opportunity for New York's living donors to avoid going into debt to donate. Living donors will be reimbursed for their lost wages and out-of-pocket expenses. New York will be the first state in the country to offer this opportunity for donation to be cost neutral for donors.

 Currently the Federal Government only reimburses when both the recipient and donor make less than 350% of the poverty line (around $47,000). The LDSA will reimburse the lost wages of donors who make up to $125,000 as well as the costs of donation (travel, childcare, etc).

 In addition, the LDSA will ensure that all potential recipients will be educated about transplantation.

 There are currently 8,569 people on New York's transplant wait lists, 7,234 of whom are awaiting a kidney. With the LDSA, we anticipate that far more New Yorkers will benefit from a living organ donation.

Here is the press release.

On Tuesday, January 3rd from 4-5pm ET, we will have a virtual celebration and toast the passage of the LDSA! Here is our zoom link.

Please share this good news far & wide!

Best,

 Elaine

Director, Waitlist Zero "

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Because the National Living Donor Assistance Center (NLDAC) is a payer of last resort, the NY law will replace NLDAC for NY donors who do meet the means test, and so it will also allow the NLDAC budget to go further.

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Update: Frank McCormick writes to alert me that, like the authorization for NLDAC,  the NY State law (https://www.nysenate.gov/legislation/bills/2021/S1594) "requires that the Program shall be payer of last resort..." I hope that this doesn't turn into a competition to be the payer of last resort in a way that might cause some NY donors to fall between the cracks, and not be reimbursed either by NLDAC or the State of New York.